Saturday, March 27, 2010

World Autism Awareness Day... some thoughts


So lately there has been a wave of discontent washing over the land of bloggers who parent autistic children (one of the fiercest kind of mother bears). After this post, in which a mother of seven details her disgust at someone else's child misbehaving in public, hit the cyberworld, there was a call for bloggers everywhere to write a post about World Autism Awareness Day. I was going to stay out of it, as I felt like enough had probably been said on the subject, but when I saw that World Autism Awareness Day happens to fall on my son's birthday, my son who has a mild "case" of Asperger's Syndrome, a high-functioning type of autism, I felt I could hardly ignore it. So, here's my contribution...

I don't know if the little girl in the post was rudely hurrying the author's daughter off the library computer and being encouraged to do so by her coddling grandmother (I always thought a little coddling was in a grandmother's job description, but perhaps this was out of line) or if the girl had autism. Probably know one will ever know. The truth is it could have been either one. I have to say, I have seen things from the point-of-view of the author. Seen parenting as only black and white - children were either well-disciplined or they weren't. And that I had every right to roll my eyes at the ones who weren't. Then my son came along, and brought shades of grey into the picture that I had never seen before.

I had been told that Asperger's and ADHD (which my son also has) were psychobabble. Labels used to excuse bad parenting. And I might have been a person to believe that at one point in my life, but God humbled me in the most direct way by giving me my son. And I am grateful for it. Because it was a gift that changed the way I viewed the world. Because I know that when my seven year old son once barreled and pushed his way through the packed lobby after his gymnastics class, it wasn't because he thought he was better than everyone else and deserved to get out first. It was because he was trying to frantically escape the crowd to avoid the hundreds of touches that were overstimulating the skin he was about to burst right out of. Because that part of his brain, the part that is sensitive to touch, is more supercharged than other people's are. He didn't hear the chorus of "Excuse You!"s or "How Rude!"s, but I did. And so do the hundreds of other parents out there who are doing all they can to make their autistic spectrum children fit in in a world of neurotypicals. Is it okay to let children push people out of the way? No, of course not. And we are constantly working on ways to help my son deal with crowds, and patience, and are constantly teaching him that that is not a cool thing to do. But it has taken longer than it does with other children. Because one of the issues that autistic children have to deal with is being "mind blind", and not being able to tell what other people are feeling or thinking, not knowing what bothers them. And while teaching and discipline in life is what drives much of our behavior, you have to admit, so does worrying about doing things that might offend other people. Take that element out, and yeah, sometimes you might burst out with some geeky or jerkish behavior. But you don't mean to.

My point is, God made everyone different, and is it my place to judge the behavior of others? I used to think so, I did. But not anymore. The next time some guy pushes past me to get off a bus, will I be mad? Probably. But will I go home and write a post about his rudeness. Probably not. Maybe there was more to his shove than rudeness. Maybe he was a claustrophobic on the verge of a meltdown. Maybe his wife was at the hospital at that stop about to have a baby. Maybe he was just being rude. There are more circumstances than we can ever imagine driving people's behavior. Maybe that little girl at the library was working on patience in the best way she knew how, maybe the grandmother didn't stop her because she was distracted by grieving a recent death in the family, or maybe neither one of them stopped to give a thought to those around them. Most people don't wear signs detailing what's going on in their lives, whether it be a disability or a bad day. So does that make it okay to throw stones?

It is not OK to be rude, ever. And there are children out there - many, many children - who are allowed to get away with it. And that is sad, because it is almost getting to be the norm. But is a lack of compassion and empathy (or say, judging people for little things like using the computer at a library instead of looking at the books) perhaps a form of rudeness, too? If rudeness means not thinking of how what you do or say affects others then, well... As an example, if that little girl did have autistic issues, to jokingly say that her flapping, which is a natural calming tendency in those with autism, was about to make her take flight, is a slap in the face to those parents who are wishing with all their might that their kids didn't have to "flap" to cope with daily life, but whose kids do anyway. I'm just sayin', parents raising autistic kids have it rough enough, trying to deal with the quirks and freak-outs that are an unavoidable part of their child, especially in the younger years until they've learned to cope. Sometimes a smile of compassion instead of a slap in the face could go a long way. I am positive that the author of the post mentioned above never intended to offend those with autism in any way, and I do commend her on keeping her patience in check at the time. But I think the opposition is trying to point out that what looks like undisciplined behavior could be more than it seems sometimes. It isn't always black or white. Sometimes you just have to trust in the greys, that may be a little bigger than what you've experienced in your own life.

So April 2 is World Autism Awareness day. Why should the world be aware of autism? Because autism makes it HARD TO COPE WITH LIFE, and those who have it, or who are raising those who have it, could use a hand up every once in a while. Or at least not a shove down.


4 comments:

  1. I went and read the blog post that prompted this post. WOW! It's people like that,who make me so self concious. Sometimes I do wonder why I can't make my children behave like the perfect angels this lady obviously has. But then I remember that dispite what others believe my child is on the autism spectrum, and all I can do is my best. We will be celebrating Autism Awarenes day as well.

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  2. Amen! I had not heard about the post before this entry, but I have noticed that she got so many comments that she has decided not to take any more comments on it. I find it so ironic that a post that talked about 1)how rude these people were, 2)how well behaved her children were, 3)that she was reading the Bible and that 4)criticized how the Grandmother never redirected the girl to the books, was herself, 1)very rude with her article, 2)had children as rude and unsypathic as she was, 3)her little girls were on the computer, not looking at books. I guess she wasn't reading the many scriptures about loving thy neighbor or not being judgemental, or perhaps that too doesn't apply to her and her family...I guess I could be criticized about being judgemental about her as well, but having a autistic child seems to leave one open daily to other's criticism and scorn and once in awhile you reach the limit and just want to hold up a mirror so they can see how they are all the things they are accusing others of, and much, much more. And don't think that if the Grandmother had patiently explained to this lady, that it would have made a difference, because I have many times with others in similar situations and have just recieve similar rude comments back for my efforts.
    -Phyllis, with a Autistic son and two others on the autisism spectrum and tired of it

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  3. Nice post, Casey. I wish autism had more champions like you, and then our job as parents wouldn't be so full of the heartbreak that exceeds our kids' struggles--maybe we wouldn't have to deal with insensitive people and eye-rolling judgers, too.
    If only we could swap for twenty minutes with the ones who assume our parenting is at fault. Could they have the stamina to stay up late when our Aspies can't fall asleep, or take the measures we have to, to prevent bullying, or navigate a crowded store without a meltdown, or endure the scathing criticism of our kids who are only trying their best in a world that confuses and frustrates them, etc, etc.
    Posts like yours go a long way to building understanding and enlightenment. It is one thing to be uninformed, but another to be willfully ignorant, as is our friend who mocked the hand-flapping little girl.

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  4. Thanks for writing this. I wasn't sure I was going to write a post either..All kids develop and grow at their own pace-neuro typical or not. What saddened me the most about her post was that she missed some big opportunities. She could have reached out to the grandmother-AND she could have taught her own children a valuable lesson in how we are all different.

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